My journey to become a non-directed living kidney donor and everything that came after donating. It's easier & safer than you might think. With over 3000 Canadians waiting for a kidney, increasing awareness of organ donation is critical.

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Friday, June 1, 2012

Dialysis isn't a cure

In my last post I mentioned that dialysis isn't a cure and that for many people, it also isn't something that can go on indefinitely. Like many critical illnesses, some patients respond well to the treatment and do well for upwards of 20-25 years. However this is not a reality for the large majority of dialysis patients. Why should you care? Because kidney disease can happen to any of us. It currently effects over two million Canadians and many of us don't even know we're part of that group.

The National Institute of Diabetes and Digestive and Kidney Diseases (out of the US) reports the dialysis survival rate at close to 80 percent through one year, 64 percent through two years, 33 percent after five years and 10 percent through 10 years. There are many types of cancer (which get much more public and media attention) that have better survival rates than that.

There are a number of factors that influence how a patient does on dialysis including age, how sick they were when they started dialysis and what other illnesses they may have. For example, traditionally those with diabetes and/or high blood pressure do not live as long on dialysis as those with poly-cystic kidney disease (PKD). Younger people (in their teens, 20's and 30's) live longer on dialysis than those who are older.

Dialysis, while designed to help the body by filtering waste and removing fluid when the kidneys can't, also has a "darkside"...a negative impact on the body. The treatments can cause bruising and cramping, nausea and other flu like symptoms. It can impact things like your thyroid and it's functioning. A patients blood pressure can suddenly dive while on the treatment, which stresses the cardiovascular system. Electrolyte imbalances and sudden shifts also greatly stress the body. In fact, Cardiac disease is the largest single cause of death for both hemodialysis and peritoneal dialysis patients, accounting for approximately 43% of all-cause mortality each year.

I was really surprised to learn this. Because of my lack of exposure (thankfully) to kidney disease, I had always assumed dialysis did the exact job that a healthy person's kidneys would do and while a little inconvenient, a person could live a totally normal life with the treatment. As I've continued to learn more about dialysis, the "day to day" things you hear about from patients that don't make it onto the "About Dialysis" information pages are eye opening. So many people have had the experience of seeing a fellow dialysis centre patient go into medical distress or cardiac arrest while receiving the treatment. Many have expressed sadness of learning that a patient they have sat beside every day for months while being dialisized who "seemed fine" has suddenly died. As if living with a critical illness isn't emotionally tough on its own; so many patients have to experience the loss of other patients, just like them. It's has to be hard to hold onto hope in that situation.

Dialysis patients are tough. They rally around each other and look for the silver lining in their situations. I am amazed at how they get through something that doesn't ever have a scheduled end date (other than a transplant and even that isn't a predictable date). You want to learn more about how to be resilient? Talk to a dialysis patient. At the same time, I don't think it is fair that this is the only treatment option for so many people.

What is the solution? Well first off all, prevent more people from needing dialysis in the first place. Kidney disease affect too many people to not be getting more educational and media attention, the way that Cancer, AIDS, MS and Heart and Stroke do in Canada. As adults we need to learn what we need to do to keep our kidneys healthy and do it. We need to teach our kids as well. We need to understand who is more at risk and make sure there is the right supports in place to help them. Secondly, we need better treatments for those with kidney disease to slow down the progression of their disease so they don't end up with ESRD. This means more research and understanding into the causes of kidney disease and coming up with alternate treatment if not cures for some forms of kidney failure. In the meantime, an increase in both living and deceased donors would help get many folks off dialysis and effectively save their lives, in a way that dialysis simply can't.

5 comments:

A transplant may be a 'scheduled end-date' but it certainly isn't a cure. I realise you don't mean to make it sound like it is, but many people assume that it is and this blog could be the perfect way of making clear that it is simply a (better, but not always) form of treatment. In fact I'd go so far as to say your first paragraph would read the same if 'dialysis' was changed to 'transplant'.

I do agree with your sentiments that media attention needs to be more focused on kidney diseases/failure though.

Thanks Katie. I appreciate it isn't a cure and I know transplantation isn't a solution for everyone but that for many it is (like you said) a better form of treatment for kidney disease. Some do see it as a cure but I think that depends on why they needed a kidney in the first place. Thanks for sharing your feedback!

Most 'side-effects- of dialysis are in fact a side-effects of the way dialysis is done.It is a sign of dialysis done on a plug-in-and-go basis without paying attention to the patient.For example,a lot of those symptoms are attributable to mild dehydration through dialysis which is completely preventable,same with the low blood pressures,etc. But because it is time-consuming and therefore not cost-effective to indidualize dialysis treatment,institutions find it a lot easier to demonize dialysis and tout transplantation as an end-all-be-all solution.The truth is there are just as many transplants gone wrong or with more side-effects than dialysis (and this includes trhe donors) as there are bad experiences with dialysis.There are so many people who will never be able to get a transplant yet you don't see the industry pushing for true improval in the dialysis area.Transplants are not rosy,just a different set of problems in lieau of a solution to the same problem and live donation is not a risk-free,why-doesn't-everybody-do-it procedure.

Good information Anonymous - thanks for sharing. I do appreciate that transplants are not a cure and they can go wrong on both sides. However for many people they are the preferred treatment. It is a personal choice either way. I have been very open and honest that living donation is not without risks...again it is a personal choice that must be made after careful consideration.

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About Me

I'm a marketing/communication "Dilbert" in Calgary who loves writing & the social media world. I like to write about things that matter to me (family, being a living kidney donor, the universe, and other random facts). Life can be very interesting if you just take the time to look around you.

Note to readers

As you know, I am not a doctor or a healthcare professional. This material is designed for information purposes only, from a potential donor/patient perspective. It should not be used in place of medical advice, instruction and/or treatment. If you have specific medical questions, please consult your doctor or an appropriate healthcare professional. That being said, we learn a lot about the personal side of life's choices from our online communities so discussion and opinions are always welcome.